Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimers disease are at risk of experiencing diminished agency and decreased communion. Their family members, especially their partners, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimers disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimers disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimers disease as slightly weaker compared with the persons with Alzheimers disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimers disease.
Funding Agencies|Oscar and Maria Ekman Foundation; Dementia Association - The National Association for the Rights of the Demented; Swedish Order of St John; Erling-Persson Family Foundation; Ersta Diakoni